Patients are an invaluable part of any health research project
Peter Mellor, one of our Facilitators, blogs about his experience of developing an app for rheumatoid arthritis (RA) patients – and how patients have been absolutely crucial to the project’s success.
When I joined CLAHRC Greater Manchester in April 2014, it was my first experience of working within the NHS and, as I was fresh out of university, my first real experience in a full-time role that didn’t involve stacking tins on a shelf. Since joining CLAHRC there has always been the opportunity for me to be involved in a wide range of projects, which has been great for my personal and professional development.
For the past two years I’ve been heavily involved in our capacity development activities and kidney health, wound care and end-of-life programmes; all of the projects I’ve worked on have been enjoyable and valuable learning experiences. It wasn’t until September 2015, when I was enlisted to take on the role of Facilitator on the REmote Monitoring of Rheumatoid Arthritis (REMORA) project, that I was first exposed to our programme of work focused on exploiting technologies.
The REMORA project presented an entirely new challenge to me as I had never worked on anything so rooted in the technological aspect of patient care, nor had any experience working with RA in any of my previous work. One of the things that excited me most about getting on board with this piece of work was the chance to improve my understanding of the technology of healthcare as well as being able to engage with a number of new teams and whole new target demographic of patients and members of the public. The fact that I was also able to be involved with the development of a mobile phone app was great for someone like me who loves their technology. Due to the number of people who have contributed to the study, I’ve been able to work with staff from the University of Manchester who I had previously had positive working experiences with, as well as getting the chance to work with new staff from the university, Salford Royal NHS Foundation Trust information technology department, the Health eResearch Centre (HeRC), and Arthritis Research UK.
Starting just under 12 months ago, we worked with with HeRC to develop the first working version of the REMORA app. It was great to be involved in this development phase, during which I worked to recruit patient participants to the study through the rheumatology clinics at Salford Royal. These patients were instrumental in the development of the app as we needed to make sure we made it as useful as possible to the people who could actually benefit from its use. All of our participants have been a joy to work with and to see such positive engagement from members of the public in CLAHRC work is really encouraging, not just for this piece of work but for all other CLAHRC projects and for the future work we are hoping to do.
The app we’ve developed for this project is a really useful tool for RA patients as it captures information daily, weekly and monthly, asking patients to record pain, swelling and stiffness of joints, difficulties with common daily activities associated with RA and details about how RA may be impacting on the patients’ lives overall. The really important thing that sets this app apart is that it connects directly to the patients’ records at Salford Royal so the information can be viewed by clinicians and used to inform their consultations with patients, which is exactly what we’re doing now in our app testing period.
We’ve just finished our first testing period with patients using the app for the first time and the response we’ve had has been brilliant. All our patients have been fully on board with using the app and the feedback we’ve had has been majorly positive. We’re currently in the process of taking the feedback and making the improvements our patients want to see as we gear up for our next round of app testing in July. The strong input we’ve had from our patient participants is one of the things I think CLAHRC does best and the fact that for this study we’ve had so many enthusiastic participants has really helped to keep things chugging along.
Since joining the project around nine months ago, my knowledge and understanding of RA has grown significantly. Through the engagement with our participants and discussions with our experienced team members I’ve learned that this condition is so much more than just general stiffness in the joints. By gaining this knowledge over time I’m glad to say I’ve been appreciating the importance of this type of work more and more and I’m excited to be able to see where this project can go over the next few years and hopefully see how many people it can bring real benefits to.